Re: Too Scared to Band!!!

[Guest guest]

Hello Tracey

I do think that Gracie is a beautiful baby, and her head looked

pretty good to me. Of course you see her plagio more than anyone

else. I can't really comment on the tallness of the head and if it

will continue to grow this way. I do not know. I think that you

should do what you feel is best and if this is not to persue another

band than that is what is right for you. If Gracie's head grew

wheather that be up or out, than the brain should have not been

restricted in anyway, and if you say that Gracie has no delays

and/or conserns then I really don't think that will be an issue.

Maybe you can call CT and ask them about the tallness and if it will

continue to grow this way. I know you don't have a CT where you

are, but I do think that they would give you honest answers. Good

luck and keep us updated on your decision. You will get tons of

support here regardless.

Sandy WIllow's Mom

Torticollis resolved

Cranio Germany Grad 02/04

> Hi,

> Thanks everyone for looking at Gracie's pics...we were to the

ortho

> on Friday and I commented how narrow and small her helmet was and

he

> said that was the shape of her cast only modified to allow for her

> head to pop out on left side. He recasted her because I refuse to

> use this thing anymore. My husband and I think we may not go

through

> with anymore correction. I know her head growth was

STUNTED..before

> helmet she was 85 percentile and now 25 th...I am so worried that

> her brain has been affected. Developmentally she's great...walking

> already and a little smartypants. The ped seems to think not much

of

> this, I look at this helmet now and see how small it really is and

I

> am so upset I did not speak up sooner!!! Grace has also been doing

> alot of shivering, several times a day..has anyone had this??? I

> know I said I was going to check into Starband, but I think I am

way

> to aprehensive now...I mean what if we got another bad fit...Grace

> is a beautiful babe and her facial assy is almost next to none,

that

> really was my most concern, as the flat spot will be covered up

with

> hair. Please let me know what your opinion is on her lack of head

> growth...If her head grew up not out, is that still ok for brain

> development? Will her head now grow out or will it follow the

> pattern of up...can her head get taller??? I know you all are not

> doc's but you may have come across this sort of thing...I will be

> taking her back to the ped to put my mind at peace, I need to know

I

> did not hurt my babe!!! Thanks for your posts and advice...

>

> Tracey and Gracie

[Guest guest]

hi tracey,

i can't answer most of the questions you have but i can

reassure you of one thing. the shape of the skull has nothing to do

with intelligence or mental capacity. the strongest example of this i

can give you is this...in aniciant eygpt and in some indian tribes of

north and south america royal families remodeled their babies shulls

to be very long and very tall. it was a sign of royalty and wealth!!

most if not all these people were prided on their intelligence. the

skull does NOT put pressure on the brain unless it has been smashed

or fractured in some tramatic way. the plagio does not cause any type

of retardation (that has been documented) the brain simply molds

itself into the shape the skull is..whether it be round or tall or

flat. i even went so far as to ask my mom about this (she is in the

medical field and she looked in her medical books (i have had these

concerns also) nothing shows that plagio of any kind affects mental

capacity or intelligence.

no matter what your decision we are here for you!!!

kelly(mom to kathryn, plagio/brachy/tort, banded 5/03,texas)

> Hi,

> Thanks everyone for looking at Gracie's pics...we were to the ortho

> on Friday and I commented how narrow and small her helmet was and

he

> said that was the shape of her cast only modified to allow for her

> head to pop out on left side. He recasted her because I refuse to

> use this thing anymore. My husband and I think we may not go

through

> with anymore correction. I know her head growth was STUNTED..before

> helmet she was 85 percentile and now 25 th...I am so worried that

> her brain has been affected. Developmentally she's great...walking

> already and a little smartypants. The ped seems to think not much

of

> this, I look at this helmet now and see how small it really is and

I

> am so upset I did not speak up sooner!!! Grace has also been doing

> alot of shivering, several times a day..has anyone had this??? I

> know I said I was going to check into Starband, but I think I am

way

> to aprehensive now...I mean what if we got another bad fit...Grace

> is a beautiful babe and her facial assy is almost next to none,

that

> really was my most concern, as the flat spot will be covered up

with

> hair. Please let me know what your opinion is on her lack of head

> growth...If her head grew up not out, is that still ok for brain

> development? Will her head now grow out or will it follow the

> pattern of up...can her head get taller??? I know you all are not

> doc's but you may have come across this sort of thing...I will be

> taking her back to the ped to put my mind at peace, I need to know

I

> did not hurt my babe!!! Thanks for your posts and advice...

>

> Tracey and Gracie

[Guest guest]

Tracey,

Your daughter's lack of head circumference percentile change is

owing to her not having much of a growth spurt OR her head growth

being redirected upward (meaning that the place where the

circumference measurement is taken didn't expand outward.) Her head

and brain did grow, just more upwards, so please don't think that

you hurt your baby in any way by having her wear a band!! As stated

in previous replies, there are many examples of civilizations

actively participating in reshaping infants' heads to reflect a

desired headshape, without affecting brain growth or function.

That said, it seems from this post and previous posts that you are

not entirely happy with the headshape that Gracie's head has been

molded into. The pictures I have seen of SickKids helmet and the

Clarren helmet (which is of similar design) all have fit lower on

the head than the photo you posted of Gracie's helmet. I support

your decision for a re-cast, but am leery of using this orthotist

and passive helmet (at her age) again. I wonder if this is the same

orthotist from SickKids in Ontario that has treated other babies

from this group - I don't recall either one of them commenting on an

upward headshape or ill-fitting helmet, or even one that rode high

on their baby's head. Is this the only ortho working there? My

knowledge of helmets and bands is pretty rudimentary, but I do know

that the orthos leave space to where they want to redirect head

growth - if Gracie needed to fill out the left, back side, but her

head grew tall, then perhaps the helmet unintentionally had space on

the top of her head. Did the ortho agree with you that in spite of

his explanation, Gracie's head had grown markedly upward? If he/she

didn't agree with you, I wouldn't have any confidence that they

could properly assess and adjust another helmet for my daughter. Do

you have any other options for choosing a different ortho there? In

addition, you'll have to take into consideration that this is a

passive helmet, so at Gracie's older age, it will be difficult to

predict how effective and how long treatment will take with another

passive helmet.

I would recommend that you communicate via phone calls and email

with the nearest DOCband clinic to you, whether in the US or Canada,

and ask for their professional opinion on correction opportunity for

your daughter, considering her headshape and age. Did you ever get

a chance to give them a call or email? What about the Starband

option you were considering in Rochester? Have you been able to

speak personally with the ortho there? It would be ideal, and may

be necessary to choose an active band for Gracie at this point (I

don't personally know what is the max age for a SickKids helmet.)

Although uncommon, we do unfortunately hear of parents whose baby

has an ill-fitting band. I can not imagine what kind of stress and

struggle that must feel like, but we have heard of successful

recasts, or a successful transition to a different band with a new

company. Base your decision on whether or not you will pursue

different treatment as if Gracie's headshape would not change at all

from present day. Conducting the research at the

companies/locations you might consider doesn't constitute a definite

decision, so by all means, call and question and send email photos

for evaluation!!! Then you will be fully informed about all the

options and orthos, and you can feel comfortable basing whatever

decision you ultimately make on the facts at hand.

I wish I could be of more help!

Take care,

Christie (Mom to Repo'd Remy)

> Hi,

> Thanks everyone for looking at Gracie's pics...we were to the

ortho

> on Friday and I commented how narrow and small her helmet was and

he

> said that was the shape of her cast only modified to allow for her

> head to pop out on left side. He recasted her because I refuse to

> use this thing anymore. My husband and I think we may not go

through

> with anymore correction. I know her head growth was

STUNTED..before

> helmet she was 85 percentile and now 25 th...I am so worried that

> her brain has been affected. Developmentally she's great...walking

> already and a little smartypants. The ped seems to think not much

of

> this, I look at this helmet now and see how small it really is and

I

> am so upset I did not speak up sooner!!! Grace has also been doing

> alot of shivering, several times a day..has anyone had this??? I

> know I said I was going to check into Starband, but I think I am

way

> to aprehensive now...I mean what if we got another bad fit...Grace

> is a beautiful babe and her facial assy is almost next to none,

that

> really was my most concern, as the flat spot will be covered up

with

> hair. Please let me know what your opinion is on her lack of head

> growth...If her head grew up not out, is that still ok for brain

> development? Will her head now grow out or will it follow the

> pattern of up...can her head get taller??? I know you all are not

> doc's but you may have come across this sort of thing...I will be

> taking her back to the ped to put my mind at peace, I need to know

I

> did not hurt my babe!!! Thanks for your posts and advice...

>

> Tracey and Gracie

[Guest guest]

Hi Tracey,

I do not post that frequently, but my Colin has been banded for a few

weeks now and is 5 months old. He has a taller and narrower head

shape rather naturally to begin with and I am beginning to have some

concerns similar to yours. My dd had no plagio and has a narrower,

longer head and face. I think your Gracie is adorable and looks good

now. But it is up to you to decide on banding further. Her symmetry

looks good, which is what I personally am concerned about. I think

we have a basically passive band as well, and the lining foam is cut

away over the flat area in the poterior only. The orthotist said he

is watching to be sure Colin's circumference does not exceed that of

the inside of tha band and if so they begin removing material as he

grows. I am trusting him, but it is a worry, because he does have a

smaller head compared to his height to start.

Anyway, trying to offer some support and understanding. I do think

she looks very good, technically speaking, and is a very cute baby.

I would not give her a second glance(regarding her head shape) if she

were not pictured on this plagio site. And I have been looking

around these days! I am trying to see how many kids really have this

and go untreated and I see alot these days. So our kids will have

lots of company, I think, if they are not 100% round and perfect.

I am amazed at how many moms come up to me and share with me that

they were concerned about their child's head shape and never were

directed towards treatment. I do not mean to minimize the importance

of this treatment or mangement with repo, but just that I think our

kids will be fine with their peers in the future with this issue. I

think if you have decent symmetry, you should have few worries about

TMJ issues or such in the future. Well, thinking about that helps me

feel better about it, anyway, and we are all doing the best we can

for our children. Best wishes with your decision. mish

> Hi,

> Thanks everyone for looking at Gracie's pics...we were to the ortho

> on Friday and I commented how narrow and small her helmet was and

he

> said that was the shape of her cast only modified to allow for her

> head to pop out on left side. He recasted her because I refuse to

> use this thing anymore. My husband and I think we may not go

through

> with anymore correction. I know her head growth was STUNTED..before

> helmet she was 85 percentile and now 25 th...I am so worried that

> her brain has been affected. Developmentally she's great...walking

> already and a little smartypants. The ped seems to think not much

of

> this, I look at this helmet now and see how small it really is and

I

> am so upset I did not speak up sooner!!! Grace has also been doing

> alot of shivering, several times a day..has anyone had this??? I

> know I said I was going to check into Starband, but I think I am

way

> to aprehensive now...I mean what if we got another bad fit...Grace

> is a beautiful babe and her facial assy is almost next to none,

that

> really was my most concern, as the flat spot will be covered up

with

> hair. Please let me know what your opinion is on her lack of head

> growth...If her head grew up not out, is that still ok for brain

> development? Will her head now grow out or will it follow the

> pattern of up...can her head get taller??? I know you all are not

> doc's but you may have come across this sort of thing...I will be

> taking her back to the ped to put my mind at peace, I need to know

I

> did not hurt my babe!!! Thanks for your posts and advice...

>

> Tracey and Gracie

[Guest guest]

Hi,

I would just like to second Christie's excellent comments and

suggestions. I definitely think that visiting, or at least speaking on

the phone with a very experienced orthotist who fits active bands

would be a good idea. You could call CT in Canada (Alberta, I think)

or the Rochester Star band clinic I wrote about in previous posts. If

it were me, I would do it just to get more information before making

any kind of a permanent decision about whether to try for more

correction.

I remember when 's plagio was first diagnosed and we were

tangling with her first helmet (which we dropped due to a bad fit) I

just wanted to close my eyes and fast forward time so that all the

struggle I knew we were going to have to go through to make things

right would be over with. I felt like time was running though our

hands like sand and we were getting no-where since we got off to a

false start. We restarted with a much more experienced orthotist

(Cranial Tech in Connecticut), got a band that fit very well, and

suddenly all those terrible feelings went away. Once the fit problems

were gone it was easy and it worked.

Its all about the fit and the experience of the orthotist. Don't be

scared of bands - just be scared of ill fitting ones!

Best Wishes,

> > Hi,

> > Thanks everyone for looking at Gracie's pics...we were to the

> ortho

> > on Friday and I commented how narrow and small her helmet was and

> he

> > said that was the shape of her cast only modified to allow for her

> > head to pop out on left side. He recasted her because I refuse to

> > use this thing anymore. My husband and I think we may not go

> through

> > with anymore correction. I know her head growth was

> STUNTED..before

> > helmet she was 85 percentile and now 25 th...I am so worried that

> > her brain has been affected. Developmentally she's great...walking

> > already and a little smartypants. The ped seems to think not much

> of

> > this, I look at this helmet now and see how small it really is and

> I

> > am so upset I did not speak up sooner!!! Grace has also been doing

> > alot of shivering, several times a day..has anyone had this??? I

> > know I said I was going to check into Starband, but I think I am

> way

> > to aprehensive now...I mean what if we got another bad fit...Grace

> > is a beautiful babe and her facial assy is almost next to none,

> that

> > really was my most concern, as the flat spot will be covered up

> with

> > hair. Please let me know what your opinion is on her lack of head

> > growth...If her head grew up not out, is that still ok for brain

> > development? Will her head now grow out or will it follow the

> > pattern of up...can her head get taller??? I know you all are not

> > doc's but you may have come across this sort of thing...I will be

> > taking her back to the ped to put my mind at peace, I need to know

> I

> > did not hurt my babe!!! Thanks for your posts and advice...

> >

> > Tracey and Gracie